Battle Cries

As a mother and a professional in the field of special education for over twenty years, I am impressed with Miriam Edelson's Battle Cries: Justice for Kids with Special Needs. Edelson is a well-educated, involved, and resourceful parent who asserts that an individual with a disability is, first and foremost, a person and a family member. Edelson begins her book with a first-person account of her battle for justice and equality for her son Jake, a child with severe disabilities who has since passed away. She describes personal challenges, as well as the obstacles she and her family faced when dealing with individuals and social service agencies. Edelson rightly claims that her best attribute is strength of character. This is evident throughout her book, which is based on extensive research on public policy and private support (see part one) that informs the individual portraits she provides in part two.

Part one describes the "terrain" of the disability realm. Chapters cover topics such as services and supports, the marginalization of mothers who take care of children with disabilities, respite, faith and the community, and how society views individuals with disabilities. Edelson includes factual information regarding services, supports, and policy issues across Canada's provinces. General tips on how to find services are included at the back of the text; however, a list of contacts, resources, and telephone numbers is a regrettable oversight that would have been invaluable to readers.

Through the voices of mothers and one father, part two presents the "battle cries" of the book's title. Each portrait presents the story of the child's birth, life with the family, the education and services that the child and family receive, and how family relationships intertwine with their individual communities. The portraits document the heroism of families who advocate on behalf of their children and show that advocacy and appropriate planning can result in functional lives for disabled children.

Edelson uses her first-hand knowledge of mothering a disabled child and social policy to focus her narrative and research questions. She identifies the need to balance the private endeavour of cultivating a family and the use of public support that is available- although less available to children with more severe disabilities. She argues that a sense of community — whether family-based, neighbourhood-based, or culturally-based — must complement society's limited public resources.

A true ethnographic study, Battle Cries identifies essential patterns of acceptance, understanding, and growth. Edelson's heartfelt book is written specifically for families of children with disabilities and those professionals who work directly with them.

Battle Cries: Justice For Kids with Special Needs is an exceptional book for advocates of special needs children. Miriam Edelson provides a comprehensive and thoughtful analysis of the serious, lifelong difficulties facing families of children with severe disabilities, with emphasis on interaction and support within their communities. While these heartrending struggles are created by the severity of the disabilities themselves, they are amplified by shortcomings in our society in addressing the needs of families of children with disabilities. These struggles (and joys) are given human face through detailed interviews with eight Canadian families who have children with severe disabilities, including Down syndrome, cerebral palsy, Trisomy 18, deafness, CMV, and brain damage related to oxygen deprivation.

This is a thoughtful discussion of the many stresses and worries of families caring for these special children. In her book, Edelson provides support for parents who are reaching out to their community, and recommends ways to improve services and care in the context of society on both the microcosm and macrocosm levels. In sum, Battle Cries is an excellent resource for policy makers, professionals working with special needs children, and parents of children with special needs.

... an ambitious project that combines detailed portraits of eight families, a summary of relevant Canadian social policy, a few proposals for action, practical tips for dealing with hospitals and service agencies, a picture of life as a parents of a special needs child, and more.

So really, this book could be 10 books — but the truth is that 10 books might not all get read, and there is an undercurrent of urgency here. These are families with little money and no time, often riding a life/death edge. Activism, be it written or otherwise, is a luxury — a necessary luxury, but a luxury nonetheless. Author Miriam Edelson cites the examples of a facility faced with closure, whose workers took on unpaid respite care to enable mothers (and yes, it is mostly mothers) to gather and take action to keep the centre open. With a medically fragile child who needs active 24-hour care, and often siblings to care for, too, there would be no other way to take on organized protest.

The medically fragile child is at one end of a special-needs continuum encompassing all children with disabilities, physical and intellectual. The range of special-needs experiences is varied and staggering. Like I said, 10 books. Kudos to Edelson for looking for (and finding) common ground, but sometimes I wished for a narrower focus. Some children with special needs will grow into adults who take action on their own behalf, while others will always need a parent or caregiver as advocate. Specific goals and strategies differ, a fact that came out most clearly in Edelson's discussion of integrated schooling.

I caught a glimpse of a profound message from these mothers, an invitation to really examine love of life and humanity, to authentically see personhood and joy. And I only had to read one book to do it.

By the time you finish the introduction to Miriam Edelson's book, Battle Cries, you know you have found someone very special. Miriam is a working mother, raising a family, including a child with a disability, an activist, and an author. That would be more than most of us could handle, but this book becomes all the more remarkable when you realize her son Jake, who was born with a serious neurological disorder, died while she was writing it. This book is a testament not only to how much she loved her won child but her devotion to helping special needs children find a welcoming place in this world.

This book not only introduces you to Miriam's life and her family, but that of eight other families dealing with special needs children. In addition to examining the practical, social and political issues of raising a disabled child, it provides a unique glimpse into the workings of the Canadian health care system.

Miriam says, "Getting to know an individual whose life is different from our own leads us to a more complete understanding not only of that person's challenges and dreams but of the world around us — the society we live in."

Each [family] provides a face to disabilities that were just words before. As you read through the book you begin to understand the challenges each family faces dealing with the myriad of social and political issues. The constant battle to get funding for the programs their children need. But you also see how each of these families manages to tackle far more than you thought was possible. For each person who thinks they don't have time to advocate for causes they care about, these families, and Mrs. Edelson's life, an inspiration.

[Battle Cries] is packed with a lot of information, observations and suggestions for families. [Edelson] writes, "like so many other parents of children with disabilities, I envisage a society where children now most typically defined by their difference and discriminated against for it would instead enjoy lives characterized by comfort, dignity and child-appropriate physical, cognitive and creative stimulation."

As a parent I kept finding myself wanting to read the personal stories about families in the Portraits section, wanting to meet those people first before wading into the more complex array of issues examined in the first section. Edelson provides a section called Meeting the Main Characters: A Collection of Snapshots, each of which describes the families we meet later. Perhaps it is just a personal preference, but I wanted to meet the families first and then learn about the availability of and impediments to current services and supports available to them.

Topics like strategic concerns of community living, social models of disability and inclusion, ethics of care, social policy development, funding structures, physician/parent relationships, continuity of care and so on are all important issues, but make for daunting reading. However, no one said advocacy was easy, so readers need to take the time necessary to pore through the issues and perspectives.

Nonetheless, Edelson gives a thorough view of history and the development of services, supports and attitudes for and about people with disabilities, integration and segregation. Edelson says that the issues discussed in the first section of the book stem directly from the experiences of the families she profiles in the second. She is not beyond editorializing, however, and making her own personal observations: "The very spokespersons for community living who are demanding that difference be recognized and accommodated are sometimes intolerant of those who choose to make different decisions."

One of the final chapters, "Some Tips About Advocacy: Finding Services and Seeking Support" is very practical and useful for families regardless of what their philosophical foundation might be. Every parent should have this chapter to use as a guideline no matter what their circumstances or what they are lobbying for.

"Celebrate your small victories together," Edelson advises families, "and then move on to the next challenge." It would seem this book is a celebration Edelson shares with the memory of her son, and in doing so has offered a great deal for other parents to think about.